Firstly, I would like to thank Amanda & Lesley for setting up this website for us. Also to express my appreciation to them and my other sister Kerrie for taking it upon themselves to organise fundraising for Neuroblastoma Research, Ronald McDonald House and for our family. They have asked that I keep you informed by updating Tyler's progress. Thank you all for your support & kind wishes for our beautiful boy & our family.
Well, where do I begin? On the 22nd of August 2006 we were an ordinary family. Our biggest concerns were bills & on the scheme of things trivial things but just ordinary things like everybody else. However, we were happy, really happy & content in our own little world & our family. Tyler had been a little sick on & off - just like any other kid. Around four weeks earlier we had him to a doctor who said he had a chest infection & put him on antibiotics. Terry had mentioned that Tyler had recently been complaining of tummy pains, he never seemed to be in a lot of pain but enough to tell us he was uncomfortable. He would also be prone to temperatures, usually around the 39 degree mark. We would give him Panadol & it would all settle down. I had looked at him at times over the last 6 weeks perhaps & thought he looked a little pale, he also at times wasn't really interested in food. These just all appeared to be normal childhood things to me.
On the 23rd of August Terry took Tyler to see 'Dr J' (a long time trusted family doctor) this was due mainly to the high temps again & we were just a bit concerned. Terry again bought up the tummy pains issue and thanks to the thoroughness of this fantastic doctor he sent us for an ultrasound - just to see what was going on. When does your whole world come crashing in on top of you? The first time was Thursday 24th August when an 8cm tumour was discovered in Tyler’s adrenal gland (between the kidney & spleen). We were sent straight back to 'Dr J' who advised us it was most likely a form of cancer known as Neuroblastoma (neuro being nerve, blastoma being tumour). We were of course devastated. This doesn't happen to us etc, etc. He also said that this was not a death sentence for our son but it will be a very long hard road ahead for all of us. Another piece of advice was - do not research this on the internet! Thanks to the hard work of Dr J and a Canberra specialist we'd not yet met, we were in Sydney by Monday. By Sunday it did all get too much. We were told our son had a cancer that we had never ever heard of. We had no idea whether it was really serious or whether we had caught something early, so we did look on the internet & it was no doubt the worst thing we could have done. This will probably be the only time I mention statistics as I/ we choose to ignore the statistics & just focus on getting our boy better. The statistics on the internet are very poor for Neuroblastoma. I only read one story & it was not a happy ending & that was enough for me. By this time Terry & I were on such an emotional rollercoaster that we were unable to cope with thinking of anything bad & kind of made a pact to stay positive throughout this whole nightmare that our once simple life had now turned into. We had sat down together on the Saturday night & watched the DVD I had made of Tyler’s life so far. It went up to January this year. We laughed & we remembered back to all the events in the DVD - Tyler’s first smile, first laugh, starting to crawl & walk, playing in mud with his big sister. There are already so many wonderful memories we have made together & it was so wonderful to sit down & watch them. Of course we were both a blubbering mess by the end of it! We have too much to lose, there is no reason for it, no explanation & it's just not fair that such a gorgeous innocent little boy is now faced with this disease. That's why we have to stay positive & that's why we will not give up on him.
If I thought then that our world had come crashing down, there was more to follow. Monday 28th August we arrived at Sydney Children’s Hospital Randwick. The moment we walked into C2W (the oncology ward) we knew our life would never be the same again. It is a world you could never imagine yet there are so many families there. Parents smile & talk to each other. We gain strength from each other. We tell our stories, we get to know & love all the kids & the biggest thing, we can all relate to each other. I won't go into day-by-day at this point as I'm backdating & will be here forever. I'll just try to abbreviate the last couple of weeks to where we are now. Our first week in C2W consisted of many tests for Tyler. These tests included X-rays, bone scans, bone marrow aspiration (needles drawing out the fluid through the back of his hip bones), etc. Basically, these tests are needed to determine whether the cancer has spread, if so how far & to what organs. It's called 'staging'. There are 4 stages of Neuroblastoma, 4 being the worst. Tyler (thankfully) was under sedation or anaesthetic for most of these tests. It was a very long hard week for all of us and I found that meeting all the other families & having my heart go out to them for what they were going through I think I myself went through a bit of denial. My son was running around, he was laughing & playing & he was fine. I was sure of it.
Friday 1st September we were given the news we were dreading. Tyler has 'confirmed' Neuroblastoma which has shown evidence of spread to his liver. He is stage 4. No-one unless you have sat down in a chair, faced with a doctor telling you that or similar can truly understand what Terry & I felt at that moment. I don't think I can even explain it. Let's just say it's something you could never imagine. Firstly, I guess I should explain exactly what Neuroblastoma is . . . it is a tumour arising from particular nerve cells (in our case the adrenal gland) which run in a chain-like fashion up the child's abdomen & chest & into the skull following the line of the spinal cord. The most common site for the tumour to grow is the abdomen. About 50% start in the adrenal gland above the kidney. Some grow at the back of the chest & occasionally even higher up towards the neck. Much more rarely, the tumour may start in the brain itself. The site of the tumour may cause different symptoms at the time of diagnosis. E.g.: if a tumour has grown at the back of the abdomen, which has started to press on the spinal cord, it may cause a variety of symptoms including an unsteady walk or difficulty passing urine. A tumour in the chest may cause chest infections, coughing or fluid in the lung which may need treatment before the Neuroblastoma itself is treated. Many children have very mild symptoms. They may seem a bit 'off colour' for awhile or have a loss in appetite, vague aches & pains or sweating. Looking back on things Tyler did show all of the latter symptoms over perhaps the last 6 - 12 months, it's really hard to remember back but he did have them at various times. On some occasions a parent can just feel a lump.
Neuroblastoma is apparently quite rare & I've been told from a few sources that it's around 1 in 100,000 kids get diagnosed with it. As I said, there are four stages of Neuroblastoma. I won't explain the first 3 as they're irrelevant to us. Stage 4 means that the primary tumour may be any size, but the Neuroblastoma cells have broken away & spread to other organs in the body, most commonly bones, bone marrow or liver. At this stage there is no evidence of tumours in Tyler’s bones - which is a positive. However, the doctor did say that there would most likely be microscopic ones that are not detectable from the tests but he is still a stage 4 due to the fact that they have spread to his liver.
We were able to take Tyler back to our accommodation for the weekend which was just like heaven to us. We had just been given such devastating news but to be told we could take him 'home' was so exciting for us. We went to Coogee beach on Saturday with heaps of family & then the Zoo on Sunday for father’s day. We had such a good weekend with him & for perhaps a little while we were able to feel a little normal again (although we still had a huge dark cloud hanging overhead).
On Tuesday 5th September Tyler had his surgery. He was due to go down at 11am but there was a delay due to an emergency. We took him down to theatre around 1pm & they took him in to operate around 2pm. It was a very long wait but the surgeon came out & advised that all went really well. They were able to remove the whole tumour (which was more like 6cm), took a biopsy & put in his central line (tube inserted into a main vain in his chest which has 2 ports hanging of it. It will remain there until the end of treatment but makes it a lot easier on the kids as it's used for taking blood giving chemo etc. You'd probably have to see one to understand what I'm talking about). Although the surgery went well we didn't get in to see him till 7pm & didn't get back to the ward till after midnight due to his heart rate being too high. Over the last week we've had other small complications with him having a partial lung collapse (quite common after surgery) which caused his oxygen levels to drop. He's been unable to eat or drink since 4th Sept as his bowels haven't been working yet. It's all been so heartbreaking to watch especially when he's asking us for food or apple juice etc. ***see Album page for photos***
We moved into Ronald McDonald House on Sunday which in itself was a strange experience for us. Everything is really nice but is also communal so we wondered how we'd cope with the lack of privacy. On meeting some of the parents already, I now know that this is a place of support & encouragement & any friends we make here we will have for life. It's a very different kind of bond. We are all so lucky that there are Ronald McDonald Houses for families in our situation.
Ashleigh is now back in Canberra & has taken everything extremely well for an 11 year old. I have many concerns for her & am feeling rather torn at the moment but I know her life needs to be as normal as possible & I know that where she is staying at the moment she is well looked after. Everyone has been so helpful & amazing to us throughout this ordeal. It really means so much to us.
Tyler in himself is already a changed child. He has not been smiling or laughing & is just plain miserable. He only wants Terry or me & again it is all so heartbreaking. Chemotherapy was due to start Monday 11th September but he still needed to recover from the surgery as the chemo is very intensive for this type of cancer (I'll explain more about the chemo drugs later). There have been many more ups & downs over the past few weeks than I have described here. Mainly because as I said - it would take forever. We got very excited yesterday (15th Sept) cause he 'pooed'!! For us it means his body is starting to work again. As a mother it means I can nag them till they let him eat. I'm also going to see if they'll let us bring him 'home' for the weekend - or at least a couple of hours out of the hospital if they take him off the drip. For Tyler it means chemotherapy & a whole chain of horrible side effects & illness is just around the corner. For our family as a whole it means our son/ brother/ nephew/ grandson/ godson/ cousin is finally on the road to recovery.
Monday 18th September 2006 – Tyler started chemotherapy today. It’s was quite a stressful day I think mainly due to the fact that we are now about to start the chemo, we know how horrible it will be for him but at the same time it’s all so scary & ‘unknown’. What I mean by that is we’ve been told what to expect but I don’t think we’re ready to actually face it & live through it. The past few days have kind of blended into one really & now we’re finally at the stage we’ve been waiting for but it’s just so scary. We met the nutritionist who advised Tyler will need to go on TPG (basically a line that puts fatty nutrients straight into his stomach because he is so underweight. He was 13.4kg on admission (was around 14 a few weeks ago which is correct for his height) but is now down to 12.5kg. He looks so thin now & feels very bony. It’s just horrible. So because of this he will need to be hooked up to that for at least 7 days or until he puts the weight back on. For us this means we will not be able to leave the hospital after this 1st round of chemo which was our best opportunity to have him out for a few days. It’s really disappointing but he really needs to put some weight on.
We were able to take Tyler out of hospital for a couple of hours which was really nice before he got ‘confined’, so we went down to Ronald McDonald house. There were quite a few family members there including Ash which was nice but Terry & I also got a bit of time alone with Tyler which we really needed. We just had him in the pram & walked him around out in the sun & bought him some birthday presents. It was a beautiful day & he really seemed to enjoy it (even though he’s still quite miserable!). We had him back to hospital by 3pm where he threw up all over me & then we just waited for them to ‘hook him up’.
Tyler started chemotherapy at 6.05pm. I was in with him by myself at the time & was just kneeling on the floor beside his bed. He was already looking miserable & I got rather upset watching them hook him up to all the different lines & the chemo. The realisation hit me of what we were actually doing. As a parent it’s our natural instinct to protect our kids from absolutely everything & here we are knowingly putting toxic poison into our son trying to save his life. We have no option – just like all the other parents I’ve met in here, you just have to do it & one of the hardest things to deal with (apart from all the horrible potential side effects of chemo – which I will go into later) is putting your child’s life in the hands of (who at the time are) pretty much total strangers & trusting that they will be able to get them through. Complete trust is something I find hard to deal with at the moment but again there is no other choice.
Approximately half an hour after Tyler started chemo he was screaming in pain. This was most likely due to the fact that his bowel is still not functioning properly after surgery, but also likely to be caused by the cocktail of chemo drugs. I’ve seen him have the tummy cramps since surgery but this was just horrible. I’ve never actually heard him scream in pain like that & we just feel so helpless. Terry stayed at the hospital that night & had a really horrible time with Tyler screaming in pain & throwing up & till around 4am. Day 1 of chemo is now over!
Tuesday 19th September 2006 – Happy 2nd Birthday Tyler!! Well far from it really! We all did our best to give him a good birthday but again he was just plain miserable. He’d had a very bad night & just wasn’t happy. He had lots of visitors including Terry’s dad, step mum & brother who visited for a couple of hours in the morning & then my parents, nan, my sisters, some of his cousins & Ash which was really nice. We managed to have a birthday party which consisted of ice-cream cake & some bright cheery balloons from Kerrie & some sent from his cousins in Scone arriving in the middle of our celebration which was perfect timing. He got very spoilt with lots of lovely presents (as he should!) including one from the play therapy area, but it was a far cry from his 1st birthday! I think we maybe got a total of 2-3 hours out of him where he would actually interact or talk to us. He did come good around dinner time & got through some nuggets, chips & vegies – it was the brightest he’d been all day! He even managed to say goodbye to people as they left. Ash & I got a bit upset when she left as she had to go back to Canberra/ Queanbeyan. It’s all just so hard & emotionally draining on everybody. Day 2 of chemo over!
Wednesday 20th September 2006 – I stayed at the hospital with Tyler & although it was a night of broken sleep, I’d consider it a good one. Tyler slept well, woke around 1am, threw up a little, then settled down again. Can’t say I’ve ever done my washing at 1am before but I’ve got a feeling it may be something I’ll get used to! I did a bit of shopping with mum & Kerrie which was good but apart from that it was a pretty uneventful day. Tyler slept a lot but was quite unsettled & in pain on & off especially around bed time. Mum stayed the night so Terry & I could ‘have a night off’ & spend some time together & I guess he just knew I wanted to leave early! We did end up having a good night together & stayed at the pub till around 2am! We really did need it though & for a couple of hours our life seemed to be a little different from the nightmare we are living day in day out. Mum had a really bad night with Tyler & was up & down to him till around 6am when they gave him some Morphine. We don’t really like him being on Morphine but will agree to give him almost anything if it will stop his pain. Problem is that most of them cause constipation which is one of the problems we are trying to overcome! I watched the Steve Irwin memorial & just got so sad. I was just sitting cuddling Tyler & crying. He truly was an amazing guy & I'm so devastated for his family. Day 3 of chemo over!
Thursday 21st September 2006 – We had the morning off this morning & got a bit of a sleep in (which we REALLY needed!). We got to the hospital around 11.30 where it was nice to find Terry’s mum waiting for us. Mum stayed with Tyler so we could go have lunch & we had a really nice time. I’m noticing that I use the terms ‘really nice’ or 'really good' all the time now & I guess it’s because nothing seems ‘great’ anymore, really nice or really good is about as good as it gets!
Tyler pretty much had a bad time all day. He is still cramping with pain & it’s just breaking our hearts. Terry found it especially hard today because we just can’t do anything to help him. He was given more Morphine around 4pm which knocked him out till around 6pm when he woke up in pain again. They then tried Buscopan which did settle him quite well as well as more laxative type drugs to try to get his bowels going (which still isn’t working). I will need to learn everything about all these drugs just so I can keep a record of them as well as understand what they’re for. It will also help me know which ones work best so I can request them straight away. At the moment I think they’re giving him everything possible just hoping that ‘something’ will work.
We saw the surgeon today who is still concerned that there may be mechanical problems with the bowel. This could involve a piece of skin that may have grown around part of the bowel & is restricting it. If that’s the case they will need to operate again to cut it & release it. It would be a simple procedure where they would try to do it ‘key-hole’ & go open up his existing key-hole scars – it may mean having to re-open the main scar if necessary. They have scheduled a test tomorrow where he will drink some sort of dye & have x-rays to see how the dye is flowing through or if it gets blocked somewhere. The doctors on the other hand believe that the problem is just due to his recovery from surgery & the chemo because it’s so intense & one of the drugs also slows down the intestinal/ bowel movements. These differences in opinions have been quite frustrating to us but at the end of the day they both make sense. Both circumstances are perfectly normal for what Tyler has gone through it’s just a matter of working out which one is correct. If he has to have the surgery it won’t be for a couple of weeks as his white cell count would need to be at a safe level. This would most likely be just prior to his next round of chemo which means he would again be recovering from surgery! Hopefully they will find nothing wrong & he will start to improve over the next couple of days – fingers crossed! Tyler finished chemo this afternoon & already I am noticing some hair coming out when I run my fingers through his hair - only a couple of strands at a time but I just wasn't expecting it to happen so quickly. I think I will get his hair cut short or something so we can try to adjust. Although, I really don't think anything we do will prepare us for it. We can expect him to pretty much lose it in around a week & a half (so I believe). Round one of chemo is over!!
Friday 22nd September 2006 – Tyler had a REALLY good day today. He was great during the night & I woke to him sitting up in bed saying ‘mamma, apple juice?’ I was so excited. He was nil by mouth from 6am due to the tests they had to do so I ran out to the nurse & begged her to let me give him some apple juice! I said ‘it’s the first thing he’s asked for in 2 days!!’ so she let me & it was do good to see him like that. We snuggled into bed together & it was just so nice.
They took him down for what I think is called a ‘Barium’ test around 10am. This involved him drinking a chalking substance that looked like white paint & then going for x-rays at different intervals to make sure that it flows down through the digestive system properly. We were there till around 2.30pm & he was such a good boy.
At 3pm we took him to the starlight room to watch some guest dancers from the next serries of Dancing with the Stars. Then back down to x-ray for one last test.
He did a really good ‘poo’ (he’ll hate me for this later), but that’s really exciting news. The tests were clear so it means that everything is working fine & the problems were just due to recovering from major surgery & the intensive chemo. He really was a different boy. He played with his toys & laughed at them & it was just so uplifting! We may be able to bring him down to Ronald McDonald House next week if he continues to eat well but the funny thing is I feel a bit more secure with him staying in hospital on the TPN (food drip thing). Anyway, we’ll just have to see how he goes.
Mum is staying with him tonight so that Terry could go to the Brisbane/ Canterbury game with his brother Marty from Canberra & my brother in law Kevin while I went out with Kerrie for a couple of hours. A night off feels so good especially when it’s been a positive day!
Saturday 23rd September 2006 - Tyler woke mum this morning around 5.45am & asked for apple juice. After getting it for him she told him it was early & he had to go back to sleep. He then proceeded to TELL her to 'put bed away' meaning he wanted her to pack up her bed & get up! She again tried to tell him it was too early to get up & nana was going back to sleep. She rolled over trying to ignore him & then felt something get thrown at her - a couple of minutes later 2 nurses came in asking if everything was ok - had she pressed the buzzer. She hadn't pressed it but soon realised that Tyler had pressed the buzzer then thrown it at her to get her attention!! He's in fine spirits today!! - until we got there when he proceeded to get whingy again. I think he may be 'playing' a little on mummy, but what can you do?
Hayley & Tyler’s cousin Brodie visited today & unfortunately he was pretty miserable most of the time. He threw up later in the afternoon, had a bath & then was a lot happier. Mum stayed at the hospital for us again so we could go to dinner with Marty, Hayley & Brodie. We had a really nice dinner & another good sleep in. I don't know what we would do without mum & dad. Living at the hospital day-in-day out is getting really hard & we're only at the beginning. It helps so much to have my family around. Also to have visitors - just to keep track of what's going on in the 'real world'!
Sunday 24th September 2006 - Tyler is having a much better day. He's laughing heaps & smiling. Kerrie bought Charlie (our dog) over so Terry could take her for a walk. I think they both enjoyed that although the weather was pretty horrible. Really windy (warm wind) etc. I ended up going home with Kerrie & Tez stayed with Tyler. Was good to be away from the 'Randwick' area but also felt pretty weird. Tyler did have a good day but is still getting tummy pains after food. I guess we'll just have to keep monitoring it.
Monday 25th September 2006 - Had HUGE dramas with Telstra (billing) this morning (nothing to do with Terry's work - they have been fantastic) but will choose not to go into that here. On a better note, we got a new pram (with much help from Kerrie & Kevin - THANK YOU) for Tyler - I know he seems a little old for a new pram but he had outgrown his old one & I've found he really enjoys getting away from his bed & walking around. We went to Babies Galore at Taren Point & got him the Mountain Buggy Urban Elite - which will be so good for him & for us as it's light & really easy to push around with one hand while also pushing the drip pole. Here I would like to acknowledge the generosity of the manager at Babies Galore who after hearing of what we needed to purchase the pram for gave us a VERY generous discount. Thank you so much!! From what started as a really bad day with 'the other', his generosity just made me feel so good. Tyler was so excited & he loves it!!
They planned to discharge us this afternoon - around 5pm but we had to be back at hospital around 8.30am in the morning for a quick dose of Vincristine (one of the chemo drugs) I sort of felt that it was a waste of time & effort especially packing up the amount of stuff we had accumulated over the past month but at least it was a good opportunity to clean up! And they said it was important for us to get out when we can. After all that was done & Tez had taken everything back to RMH (Ronald McDonald House), Tyler got a temperature so we had to stay! He will be on antibiotics for a couple of days so we're most likely to be here for most of the week! In a way I was relieved because if we had of gone we would have ended up in emergency anyway & it would have been a lot more stressful.
Tyler ended up being in really good spirits & was walking around & quite happy so overall it's been quite a good day. It lifts our spirits so much when he has a good day & I guess it gives us a bit of false security as he seems so good. It's often hard to remember what's ahead & maybe that's a good thing. My duty in hospital tonight. Tyler's next round of chemo will start on 9th Oct - all going well.
Tuesday 26th September 2006 - Had a really bad night with Tyler last night. He woke around 1am with tummy pains & just crying. Gave him some Buscopan which settled him until around 5am when I just had to cuddle him for around 2 hours while he was still crying & distressed. It was really hard & one of the other mums had a really hard night also so you could say we were both a little irritable this morning!
Fatty, Mario & 'Lady Luck' from The Footy Show came in around 11am this morning to visit the kids. They met with Tyler first who seemed a little unsure & wouldn't talk to them too much! He & Tez got a photo with them so that was pretty cool. It was great to see them with the older kids who did know them & you could tell how much it lifted them. It's nice that these guys can take time out to visit the kids cause to the kids it's a pretty big thing. Tyler did say 'bye footy' when they left but I don't think they heard him. Keep your eyes out for us on the footy show as they filmed all the visits. They may not use Tyler's footage as he wasn't too interactive with them but you'll get to see some of the other kids we've met. I think they're planning to air at their last show but I'm not sure if that's the Grand-Final one or if there's another after that.
He's been ok on & off all day but still getting temps & tummy pains after food. He had to have a blood transfusion early evening which seemed to help a little as he's been pretty miserable again. He shared some of our dinner which was good & his spirits seemed to lift a little. He loves his pram & it's great to 'escape' every now & then to other parts of the hospital. All in all not a bad day but not a great one. Tez on hospital duty & I'm off for an early night!
TYLER'S TREATMENT: While I have the time, I thought I'd try (briefly) to explain Tyler's treatment. There are a total of 5 courses of chemotherapy (he is 1 down). After the 3rd course of chemo he will have all his tests re-done to see if the chemo is working (it's usually at this point that they would operate to remove the shrunken tumour. As Tyler's main one has already been removed we don't expect any surgery at that point & his liver tumours should be very small by that point). If tests are good he'll have the 4th course & get given an extra boost of (have to find the name) 'something' that makes the white blood cells grow rapidly (he gets this in between all treatments but it will be a bigger dose). Then he will have his stem cells harvested. The 5th course of chemo (extra intense to really destroy the marrow will be given, followed a few weeks later (when his blood count is up enough) by a bone marrow transplant with 4-6 weeks isolation. After he has recovered from that he will have radiation on the tumour areas then a six month course of tablets - to clean up anything left over (that can be done at home). We expect that treatment will span approx 8 months but it will really depend on how he goes in between treatments with fevers/ infections which can delay the chemo. In between all the treatments there will also be clinic visits/ tests etc that need to be done in Sydney. We have spoken to our 'outreach' nurse who is our contact if we decide to go home in between the chemo. She has advised that Canberra Hospital is very well equipped to handle any of the 'in between' fevers/ infections so we may look at that option whenever we feel comfortable with it. I think it's just a matter of monitoring how he goes with this lot & maybe after the next one we will consider it.
After we've made it through all of that, there will be a year of constant/ regular tests (most likely in Sydney) to ensure that there are no signs of relapse. Then I guess the visits & tests will decrease over a longer period of time. That is a very brief description & I was going to go into detail with all the different drugs he'll be on but I don't think it's really necessary (if you want to know more about that feel free to email me). There are many different side effects from these drugs which are all pretty serious & horrible ranging from hearing loss (possible hearing aid) to fertility problems. They are all extremely upsetting to hear about but at the end of the day - as I've said, there is no other option than this treatment.
I know when writing this it sounds all very easy & straight forward but many risks & complications can arise from this treatment. I am just choosing to stay very positive & it helps to write it down as very positive & to believe with all my heart that we will get through this to the end & that we will have a very healthy boy once again!
Wednesday 27th September 2006 - Not a very eventful day really. Tyler has had his ups & downs & pretty much had a fever most of the day. They have changed his antibiotics to see if that will change things & help him improve. All in all, things aren't too bad & I sort of feel that if this is as bad as it gets - we can deal with it! Have managed to update the journal for you guys so that makes me feel like I've achieved something! We've done a lot of walking around in the pram as it seems to be the only thing that makes him happy at the moment. My turn in Hospital tonight.
Friday 29th September 2006 - Tyler has definitely improved over the last couple of days & we are slowly keeping the temps down which means the new antibiotics are working. Last night was really good as Terry had Tyler walking around 'the block' (the corridor) & actually pushing his pole around by himself - would have been good on video - but mines not working! He was so clever though!!
Today was rather distressing for both Terry & I as Tyler's hair was rapidly falling out. It was something we had both been dreading & it really was as upsetting as we had expected it to be. I guess it's the final realisation of what is happening to him. As I said earlier, it has at times become quite easy to fall into a 'everything's fine' mode & just keep going day by day but then something little - or in this case quite big happens & it's just an instant wake up call. It will always be a 'day-by-day' thing but some days will always be a lot easier than others.
One thing that both Terry & I have found comfort in are the other parents that we have met here & at RMH. It is SO helpful & reassuring to be able to talk about our fears & concerns or frustrations or anything to do with what's happening because they have all gone through it - in one way or another. I think in some way other parents have been our strength & perhaps we are strength to them at times. Many of them advised that it was better to shave their child’s head rather than wait for all the hair to fall out as it can often come out in clumps & you end up finding it everywhere throughout their clothes/ bed etc. Terry & I reluctantly decided to do the same thing tonight.
It was such a strange feeling & but at the end of it we felt SO much better. Tyler was fantastic & just sat patiently on the floor while terry cut off his hair (I have kept it in a jar just to see if it grows back the same colour!). It's going to take a bit of getting used to (Terry gave him a 3 - which I think is more like a 1) as it's a dramatic change in his looks but he actually looks really good! I was quite surprised & I think we both felt very relieved about our decision - it's like we got in first or something I don't know - kind of hard to explain! I am disappointed that Ash wasn't here with us at the time but she will be here tomorrow (which I'm really looking forward to) & we agreed that it would be harder for her to see him the way it was as his hair would just fall out into your hand if you touched his head. Anyway, we think he looks gorgeous & it will definitely make that final transition a lot easier & a lot less noticeable.
Lesley, Ben & the kids are visiting for the weekend & mum & dad will bring Ash up. For the first time in a while I think Tez & I are actually looking forward to the weekend. Things are feeling so much more positive as Tyler improves & I guess we're a bit more accustomed to things at the moment. If Tyler's temperatures keep down we could 'possibly' be able to take him back to RMH on Sunday. It will just depend. His white cells are probably as low as they can get at the moment so they would also have to improve before we would be allowed out. We feel quite safe here so are not too concerned as to whether we get out or not. A couple of days would be great while Ash is here so that we could do some family things together but we'll just have to wait & see.
It's actually quite strange in here at the moment as I'm in a four bed ward by myself. As nice & quiet as it is, it's actually quite sad as there are many families in other wards that should be here (oncology) but can't because of lack of staff (so I believe). Many staff in the last week or so have finished their rotations or have gone home (overseas) or something. I guess that's another reason that I feel safer staying here because if we did leave & had to come back in through emergency or something there would most likely be no bed for us on this ward & that's pretty scary because we do get very well looked after here.
We got a print out of his blood results today & a nurse just explained to me what they mean - I'll try to convey! For today his haemoglobin (red blood cells) are at 88 (normal range 107 - 136) if it drops below 80 he will need a blood transfusion. White blood cell count is 0.11 (normal range 4.90 - 12.80) this means he has pretty much nothing to fight off an infection which is why we need to get to hospital ASAP if his temp is over 38/ 38.5 - they need to get him onto antibiotics as his body is unable to fight anything. His platelets are 18 (normal range 214 - 483), this means if he gets a cut it will bleed more, he's more susceptible to bleeding gums etc (his blood won't clot as easy).
Now that we know what to look for, we will be able to tell that if his red cell count is down - he is most likely feeling tired/ lethargic & it's probably not a good idea to make him walk around the corridor pushing his pole! If his white cells are down - he will most likely get an infection of some sort & we need to be extra careful to keep him well away from sick people. Just goes to show you exactly what sort effect chemo has. Time to sleep near my baby again!
Sunday 1st October 2006 - Well, I think I spoke too soon! Tyler was doing so well yesterday morning to the point that the doctors were confident that we could possibly be discharged some time today. However, Tyler's condition rapidly deteriorated yesterday after lunch to the point where he was so exhausted but was unable to fall asleep due to severe pain in his tummy & vomiting. Various pain relief was given but nothing worked. It was so distressing for us to watch him like that & even our cuddles couldn't comfort him. Mum stayed with him last night & we reluctantly went out for dinner with our visitors. We did end up having a nice time but obviously Tyler was always on our mind.
Mum informed us this morning that she had a very rough night with Tyler. They were both up till around 4am with a trip to x-ray happening at 3am. He had thrown up on numerous occasions throughout the night & finally they had no option than to replace the nasal tube (that drains his stomach) to prevent further vomiting & to put him back on morphine to control the pain. We are so upset as it just feels like we've gone back a couple of weeks. I'm just so grateful that mum was with him because I don't think that Terry or I would have coped (emotionally) too well with him like that & in so much pain.
Another x-ray was taken today & the doctor feels that there is most likely a bowel obstruction of some sort (which is what the surgeons have been thinking for quite some time). We are still waiting to see the surgeons to find out exactly what they plan to do & when but it seems the most likely option is more surgery to find/ remove the obstruction. This can hopefully be done via keyhole & should not delay his next round of chemo too much.
He has been sleeping on & off throughout the day & the morphine has been turned down & is definitely controlling the pain. All we can hope from here is that whatever they decide to do, they do it ASAP & we can get him recovering again. This is all such an emotional rollercoaster.
On a good note, his blood levels are rising: red cells - 97, white cells - 2.63, platelets - 64 so that's all positive as far as the recovery from chemo goes.
Monday 2nd October 2006 - Wow, how drastically a situation can change in such a short time. Terry had a really bad night with Tyler & it's just killing us to see him in so much pain. They had been giving him the highest dose of morphine & it still wasn't taking the edge off the pain. By the time I got to the hospital (8.50am) Tyler was sleeping quite peacefully but also very 'out if it'.
A surgeon came in to see us & advised it was finally time to do something & they were going to operate today. As they don't know exactly what is going on, he had to give us all the different scenarios of what could happen. They believe it to be a bowel obstruction (which is what they have believed to be the problem from the beginning) & it could just be a simple procedure of removing some lesions or they may have to remove a section of his bowel & possibly bring it out through his stomach into a bag - this would be a temporary thing. Well as you could imagine, both Terry & I were terrified of what the outcome would be. We have to get him better & this is another step in the right direction but we're devastated that we have to put him through more surgery.
They took him in at around 12.20pm - I was too distressed to go in with him so Terry had to put on the brave face again. Although Tyler was quite doped up, Terry said he actually got scared when they took him into theatre. That's also very upsetting as it means he now knows what's going on.
After what felt like a really long horrible wait (worse to us than the first one because we didn't know what the outcome would be) the surgeon finally came out to see us (I think it was around 3.30pm). He advised that the surgery went well & that they did have to remove a small piece of bowel (that was dead) but were able to sew it back together. There was talk about another section of bowel that had been damaged that they fixed but I found I really couldn't take a lot in yesterday. Apart from all that, his bowel looked good. His haemoglobin levels dropped really low & he needed a blood transfusion but everything was ok.
They took him straight to ICU as he was on oxygen & will need to be monitored closely overnight. When we saw them wheel him out we all started crying (mum & Kerrie were there also). He looked so fragile & was just staring at the ceiling asking Terry for 'home'. I so desperately wish we could just go home. I've had enough & today I truly believed I couldn't cope with anymore, I couldn't put Tyler through anymore. Terry is also feeling the same. Today we also found it very hard to find our 'positive' feeling. We know we have to get it back & we will, we're just so emotionally drained.
We got to see him in the ICU & he was doing ok. We also know he will have one on one care & that he will be very well looked after. Once he had settled we decided to go to my uncles with the family for a BBQ as I was really craving a steak & salad! We had a really nice time & we desperately needed to try to relax a little. After a couple of calls to the hospital to check on Tyler, we decided to both stay at RMH (there's no where for a parent to stay in ICU as it's too busy). It was really strange not having either of us or mum staying with him & I kind of felt I abandoned him but as I said, we knew he was well looked after.
Hopefully from here, Tyler will recover better & be strong enough for the next chemo. Bowel obstructions occur after surgery in about 10% of cases! Keep sending us those vibes!!
Wednesday 4th October 2006 - Tyler has done pretty well since his surgery. I think the night in ICU was good for him & it was also good for us to be able to relax a little & know he was well looked after. The hardest part so far has been the fact that Tyler REALLY wants food. He was begging for it last night (only a day after op) & again we are going through the heartbreaking situation of trying to explain to him why he can't have it. For a 2 year old it's amazing that he will tell us his tummy is better (as we've told him he can't have anything to eat till his tummy is better) so that we will give him something!
During the night he got a bit restless with pain so they were giving him what is called a bolis (probably spelt that wrong), he really wanted milk & I told him he couldn't have milk cause his tummy was sore so then he told me it was better. I told him his tummy won't be better till he does a poo so then he tried to tell me he had done a poo (he's tried that trick quite a few times since). It's so cruel. He's so clever & it's killing us! He has even been up walking a little - trying to get to the bedside drawers in search of food! However, we are trying to keep him a little active to try & avoid another collapsed lung. It's amazing how quickly you become so aware of what ‘could’ happen & how to try to avoid it when going through these things.
We have found it really hard to stay positive the last couple of days but we just hold onto the fact that he will get better from this latest set back. I think the fact that he so desperately wants food is a good sign of his recovery & that his bowel will start working over the next couple of days. I really don't know how long we will be able to cope with denying him the food that he is begging for. It's so horrible & unfair. His temperatures are pretty much under control so that's also a good sign.
From here it is again - a waiting game.
Friday 6th October 2006 - Unfortunately I can't say that there has been much of an improvement with Tyler. We are still waiting & at times he comes good & we get a little bit of that 'ok' feeling but overall we're just feeling really down. We're tired, we've had enough & we both pretty much feel that we can't do this anymore - it's all just too hard now. We knew to expect some really rough times but we didn't expect the complications would be so bad. How do you watch your son go through so much in such a short time & stay strong & positive knowing that the worst is still yet to come. I don't know, I wish I did. All I do know is that somehow we will, somehow, something will kick in - a new day, a big smile or a laugh from him - something.
Today was really eventful in other ways, things that should have made us really happy & excited. In many ways they did, but underlying was the sickening pain in our hearts of our situation & the suffering of our precious little boy.
The morning started out with a visit from Anthony & Jeff from the Wiggles. They were really great with all the kids & luckily visited at a time where Tyler was not too bad - he even knew who they were! The visit was organised by a grandparent of another family sharing our room, another neuroblastoma family (I will devote a segment to the 2 other families I have met who I refer to as neuroblastoma families). It really was good & they were so genuine & friendly with the kids - really nice guys. We took lots of photos & it did make us all feel kind of special. Tyler was pretty exhausted after our 10 or so walks around the corridor afterwards & had a well deserved sleep.
At 3.30pm, Ash, Taleisha (her cousin) & I got into a taxi bus (along with some other RMH families) headed for Westmead RMH to have dinner with the Idol Finalists. Well, you can imagine what the girls were like - total groupies! It was a really exciting night for the girls, meeting the idols, having photos taken with them, getting autographs etc & the dinner was really nice also. It's something they will never forget & I'm glad I had the opportunity to take them. Some words from Ash & Taleisha: "It was the best night I've ever had, best thing I've ever done. Idol's rocked they had the best personalities, they were all so nice!!" Need I say more?
It has been a big day & it would have been an 'unreal' day if Tyler was getting a lot better. There seems to be more 'miscommunication' (that's one word for it) between the doctors & surgeons regarding his current treatment. The surgeon this morning said he wanted Tyler off the morphine (as it causes constipation - which we already knew & were concerned about) & onto regular panadol. Neither has happened. Terry is with him tonight & said he had small amounts of juice & was getting tummy pains again. It really feels like we are going around in circles. To top things off, nan has since been admitted to hospital for 'suspected' stroke. She has been unwell on & off for awhile & she is 92 so it's not totally unexpected. It's just all a bit much right now.
Hopefully tomorrow we will see more improvement with Tyler & we will make sure that we find out exactly who is in charge of the final decisions effecting his treatment. We need to know what has to be enforced one way or another. We will get there, we will get strong again but I think to do that we need to get a lot tougher! Overall, today has been a good day, perhaps just a little overwhelming.
Monday 9th October 2006 - The weekend saw quite a few ups & downs with Tyler. Saturday I had a day of not coping at all & many tears. Terry was pretty much feeling the same. I have come to doubt many decisions that have been made. One for example, is the first surgery. We were so grateful to have the whole tumour removed & felt that we were one huge step ahead but the consequences of that major surgery have seen many complications & a lot of pain for Tyler. At the end of the day I wonder whether we should have questioned the surgery - does that give him a better chance of survival? From my understanding of talking with the doctor, they see it as good that it is removed but this cancer responds well to chemo so it would have been removed at a later stage when it was smaller anyway (most likely with a lot less traumatic surgery) & most likely none of the complications he's experienced. Who's to know? The surgeons have been fantastic & they really have done their best to keep on top of things & find out what's wrong with him, the doctors have also done their thing so there's really no point trying to put the blame on anyone. We're just unlucky. He is now off the morphine so at least that's one less thing to worry about.
Tony & Neane came for a visit Saturday arvo which was great especially for Terry as I could see how much it lifted his spirits. While Terry & Tony were out 'taking a walk' Tyler poohed!! Again it was all very exciting & a sign of improvement. Unfortunately he still had very high temps & was generally unwell. Mum stayed with Tyler Saturday night so that Terry & I could go to a BBQ at my uncles with the family. It was really good 'time out' for us as we're both really struggling with all the stress.
Mum had a pretty rough night with him having temps of 40.2 deg all night & many 'runny' nappies. He also started vomiting in the morning. By the time we got to the hospital he was looking a bit better & was letting poppy cuddle him for the 1st time in a long time (he's been very picky), then of course he started to decline again. The surgeons decided a CT scan was necessary & that there was a possibility of fluid pooling in his tummy outside his bowel.
At around 5.15pm Sunday they put him under anaesthetic for the scan. They said all going well it could take around 25mins, if they find something it would be an hour or more. Kerrie & Kevin waited with us for the very long hour & a half that it took till we saw the surgeon. He had been correct & there was approx 10mls of fluid that they drained out. This, if left would have most likely turned into a stomach ulcer. He now has another tube that comes out from the side of his tummy to drain anything else that may collect in there. They have taken cultures to see if that's the source of infection (causing the temps). They also took some from the central line. We're hoping it will be the tummy site as the central line will mean more surgery to replace it if it's infected. Neither of us can take any more at this point. This just HAS to fix him.
I stayed with him Sunday night & almost straight away we could see an improvement. He was more content within himself. He slept peacefully till around 3am when I could hear his breathing start to change. At 4am I jumped out of bed to him as he seemed to be struggling to breathe. It was really scary but I remembered someone say after his scan that he could have a sore throat from the anaesthetic tube. That all made sense & a visit from a doctor & some panadol confirmed that. He settled back down really well.
This morning he is a different boy. He's smiling again, playing with his toys, talking & just looks better. We have seen the surgeons who are extremely happy with his progress, the doctors who are happy to let him recover properly before attacking him with the next round of chemo & the pain management team who are happy to start taking him off the remaining pain relief.
All in all we see a happier boy & it has done wonders for us. Fingers crossed (AGAIN) that he will keep improving & we will have NO MORE setbacks!
Tuesday 10th October 2006 - Today was a good day. Tyler had a good day. He is now off the intravenous pain relief which is really good. He's coping well with it but still needs the occasional dose of panadol as he is still experiencing some pain (if you could see all the tubes poking out of his body, you'd understand). He is now receiving some food through his nasal gastric tube (NG), only starting on 5ml per hour at the moment which will increase over the next couple of days. They need to take it slow as there's been no food in his tummy for quite some time now. I can't wait till we can feed him with real food!
It's been great to see him interested in the Little Tykes car that he pretty much claimed when we first got here. He's also back into the DVD's (especially the motorbike one that uncle Tony loaned daddy!), loves his Bob the Builder toys again & the new fishing game Ash & I got him today (had to spoil him a little!).
Hopefully, he will keep on going this way & perhaps we will be able to take him out for a couple of days before chemo, doctors are hoping for that also. I think they feel it will be more beneficial for Tyler to get him 'unhooked' & out & about for awhile. I also think they can see that Terry & I are pretty much going stir-crazy in here & need a break from it all - fingers crossed - again!
Thursday 12th October 2006 - The past 2 days have seen continuous improvement for Tyler. He is so much happier, especially today which Terry & I both feel has been his best day for quite some time. He was really excited to see Ash & said 'hey' with thumbs up when he saw his cousin Michael (who taught him to do that) was great to see. Mum & dad won this huge remote control motorbike in a raffle & gave it to him today. He absolutely loves it (just like his dad!).
Yesterday we were moved into an isolation room as his poos had been very runny all night (most likely the bowels just getting used to working again & the fact he's had no solid food). Also as a precaution in case it was diarrhea. As nice as it is to have our own private room - we are now pretty much confined & Tyler is not allowed out of the room at all.
This afternoon the whole of C2W was closed due to a diarrhea outbreak. All kids have been moved into individual rooms to keep them separated. Kitchen is closed to everyone & no visitors are allowed till at least Sunday including Ash which I'm really upset about considering she has to go back home on Sunday. I begged the NUM to let mum stay on Sat night so we could spend time with Ash & have a break, she will try considering what we've already gone through.
We had been quite happy that Tyler hadn't had a runny poo since this morning but he's now had 3. First one was after he was finally allowed some food & we gave him some yoghurt so we are desperately hoping that it's just his bowels & not a bug. I made the mistake of really starting to get my hopes up about getting out of here for a few days. He is doing so well & is so happy & finally allowed to start eating & if he now gets this bug I don't think I will cope too well. They have to send off samples to test which takes 24 to 48 hrs so there's another few days at least that we'll be here.
I'm so desperate now, just for a couple of days out in the sun with him & to let him run around without all the tubes. It's just so typical that something else could now possibly prevent that. On the other hand another part of me is thinking let's just get on with the next chemo (once he's strong enough) & take the chance on getting out after that. Terry is also very disappointed but has always been a lot more patient than me. I just need to get back to that - let's just wait & see attitude.
I think the best thing that will keep us going at the moment regardless of a few days out or not, is Tyler. He is just an absolute joy at the moment & it's really giving us both back some strength. He is the most amazing little boy I have ever known. To have tolerated so much in such a short time, to be constantly (for 6 weeks now) attached to tubes etc & yet he can come so good & be so full of life & so happy. We really can learn a lot from our kids.
Saturday 14th October 2006 - Tyler is so so good!! He is now able to eat food, drink whatever, he's cheeky, he's playful, he's happy - he's pretty much our old Tyler! It's so wonderful to see him like this. It is also a little sad because it gives us such a false sense of security & at times we have let ourselves forget (for just a moment) that he still has so much ahead & that he will again be a very sick boy. At least for now we can just enjoy every single minute of his happiness. I found out yesterday that there are no immediate plans to let us out as the sample of fluid they drained from his tummy the other day had a bug which required antibiotics for 7-10 days, therefore we are unable to leave during that time. Funny thing is, that didn't even really upset us because Tyler is just making us so happy at the moment. It doesn't really matter whether he's here, or at RMH, as long as he's happy.
Tez held the fort for me yesterday afternoon & last night so that I could spend some time with Ash. Although she's been here 2 weeks it really doesn't feel like I got to spend much time with her. We had a really good time, went to the beach with Kerrie & Michael in the afternoon then her & I went to the movies to see 'Step Up', it's actually quite a good movie & we both ate far too much popcorn! Today we had a lazy morning then went to the hospital. They let her in to see Tyler which was great & he was so happy to see her. I think it was a misunderstanding the other day & they've now said siblings are allowed. After a while visiting Tyler we went bowling & shopping. Was really good to be able to just 'hang out' together.
Tomorrow Tez & I will be taking Ash back to Canberra to settle her back in & do the paperwork stuff that's piling up. Mum is going to come & stay with Tyler for 2 nights & although we're both really grateful to mum for doing that, neither of us wants to leave him behind. We know that this will most likely be our only opportunity to do so while he is in such good spirits so we kind of have to take it while we can & we know he's in good hands with mum.
There is talk that round 2 of chemo will start next week. We've advised that we're happy for them to start on Monday while mum's here but I'm not sure if they will or whether they'll wait till we get back on Tuesday. Let's just hope that now he's recovered so well from the op (etc), he'll also handle the chemo ok. He's such a trooper!
Wednesday 18th October 2006 - Going back Home for 2 nights was something we all really needed although there was a huge empty feeling the whole time without our Tyler. We caught up with Terry’s family & Amanda & Graeme on Monday night which was really great & got Ash off to school without any problems on Tuesday morning. It was just so good to be in our own environment with our family & friends. Home was great (very overgrown with weeds) but it was just so good to be home. I think it's made us more determined to get Tyler back there as often as we possibly can & even more determined to stay positive & get him over this & healthy again.
We got back to Sydney late Tuesday afternoon & were both very excited to see Tyler again but at the same time had the sinking feeling because he's still so sick (though you wouldn't know it to look at him - at the moment). Mum had a great time with him & he was finally giving aunty Kerrie cuddles (he's being a bit picky at times!). The chemo hasn't started yet & we are still waiting to see the doctors to find out exactly what is going on. We believe that the delay is due to the bug that was in his tummy & they want to be absolutely sure that the antibiotics have killed it off but we still have quite a few questions for them. He is giving us a bit of a hard time at the moment throwing tantrums etc but I think it's just because he's finally had enough of being confined. We've been isolated in this room now for 8 days so I think it's understandable that he would have enough of it by now. For some reason they are keeping him isolated yet he has nothing contagious so that's another question we need answered. It would be great for his mental health even if we could take him for a walk around the hospital.
It's was very exciting to see the girls on Idol last night & I can only imagine all the talk at school today. It's hard being back here without Ash but we all know it's the best thing for her. I'll be spending the weekend with her at Bankstown for her basketball which will be great for both of us. Then she's off to camp 1st thing Monday morning. Busy times!!
Wednesday 18th ~ continued - We finally saw the doctor & Tyler will start round 2 of chemo tomorrow. They have decided to give him 4 extra days of the antibiotics as the tummy bug he got (another complication from surgery but again 'just one of those things') was quite a nasty one & they want to be sure that they have it under control before they damage his immune system with chemo. We are really grateful that they are being so precautious with this as the last thing he needs is further problems.
FREEDOM AT LAST!! : ) At 3pm today Tyler was 'de-isolated' & 'de-accessed' (from his lines). He was also allowed out till 5.30pm (had to be back for his antibiotics). We were SO excited & couldn't get him out of here fast enough. We went for a bit of a walk around Randwick then took him back to RMH for awhile. He loved it & spent most of the time outside playing in the cars & on the bikes. He has been walking around a lot today (a little wobbly at times) but it's only something he's been able to do over the past week or so & his legs are quite weak from just being in bed most of the time. It was so great to see him out & about & having fun like a normal kid.
When we took him back to hospital I thought I'd push my luck & see if there was any chance of taking him out again so we could all have dinner together at RMH (there are often dinners put on by different companies & tonight it was by Coca Cola). Thankfully we had a wonderful nurse who organised the antibiotics to be put through quickly (rather than the half hour it would normally take hooked back up to the line) & gave us till 8 - 8.30pm when he was due for the next antibiotics. We had the best time! It was just so good to be having dinner together & to see him playing & having fun. It's the first time in 7 weeks that we have been out like that!
Overall we feel so refreshed & confident at the moment & it's amazing how much a couple of hours out can change the way you look at things. We are still very concerned about the tummy bug but just have to trust that the extra days on antibiotics will have it under control. Going into this next round of chemo we feel (& hope) that Tyler will handle it quite well & the doctor is hoping to have us out early next week (of course depending on how he does go). He is much stronger than he was for the 1st round & is in much better spirits. He has proven without a doubt how strong he is & what a fighter he is & he is our strength & inspiration. We will however, be very glad when this round of chemo is over!
Friday 20th October 2006 - Tyler started chemo as planned last night around 6pm. He has handled it so well & so far has had no sickness or side effects. I know I keep saying this but - he amazes us so much. Today we had a really good day with him, he did sleep quite a bit but that was probably due to the fact that he had a very disrupted night. When chemo starts they flush through 2 hours of fluid to make sure the kidneys are working hard (chemo can be bad for the kidneys so they have to make sure it passes through efficiently) this in turn results in nappy checks every 2 hours. Tez didn't get much sleep either!! When handling nappies or any bodily fluids from Tyler whilst on chemo, we have to wear purple gloves. This is because his bodily fluids can be toxic to us if we come into contact with it. God help me . . . last chemo round I was thrown up on, weed on, drooled over & it did give off a bit of a tingly feeling on the skin which made me soon scrub or wash it off! It's a little scary really to know that it's so toxic.
We are feeling ok with everything at the moment & I keep reminding myself that we WILL NOT lose him. I can feel it in my heart, he's been through so much already & he now seems so strong. We have heard quite a few tragic stories over the past few nights from other parents with children who have been given no further hope. It has really shocked us & we just don't know what to say to them. I think as a parent you never ever truly give up & at the end of the day it's not over till it's over. Our hearts go out to these families & we wish them miracles. We wish everyone here that we have met miracles & happy endings.
As for us, we will continue our journey day by day & we will stay positive. I have added a photo to the gallery where Tyler is 'fighting off the cancer'! The cranky face photo taken with me is purely because he was just sick of the camera!! Day 2/ round 2 of chemo - over!
Monday 23rd October 2006 – Tyler is still amazing us. He finished round 2 of chemo yesterday & has handled it all so well. He is in isolation again due to having some runny nappies so yes, we now do the ‘wait & see’ for 48 hours in case it turns out to be diarrhea or whether it’s just a side effect from chemo & the range of antibiotics he’s been on for probably around 6 weeks! I believe it will be the latter as he has had plenty of just ‘wet’ nappies in between & most with experience of diarrhea know that it would most likely effect every single nappy!
I understand why they have to be so careful though, if we got released to RMH & he had a contagious bug it would be really bad for the other kids there & as much as I’d like to get him out, I’d hate to cause another child to get sick. Apart from all that, he’s also on some new antibiotics because he got a temp yesterday! He’ll be on them for another 48 hours or so depending on whether he spikes any more temps.
Ash had her basketball competition at Bankstown over the weekend. It was great to spend some time with her & they did really well on Saturday & won 3 out of 3 games. Ash & I stayed at Rydges Bankstown Sat night which was nice, however, I found it all a little strange to be out in the ‘real world’ again! On Sunday they played in the knockout semis & unfortunately got knocked out in the first game. They should be very proud of themselves & the effort they put in to get as far as they did.
At 6am this morning the year 6 kids boarded the train in Queanbeyan to head for their year 6 camp at Narrabeen. I really hope Ash has a great time, I’m sure she will but it’s so important for her at the moment with everything else going on, that she has a really good time with her friends.
Tyler is so full of energy at the moment he’s almost wearing us out!! Although I could put it down to plain old lack of sleep! It’s impossible to sleep in the hospital (well at least get a good amount of sleep) as there are just constant interruptions & machines beeping etc. It’s still great that we have our own room though.
Well, round 2 of chemo is over & ‘touch wood’, our boy has blitzed it! Now we just wait & see how he goes. If we get him out for a few days it’s a bonus, if not, at least he’s really happy at the moment!
Tuesday 24th October 2006 – Wow, how things can change so quickly!! Tyler was discharged from hospital this afternoon (took all day) but he’s finally ‘home’ with us! It’s so surreal & I find myself constantly looking at him while he’s asleep just to make sure he’s really here.!
It’s so funny how we’ve been looking forward to this moment for so long but when the doctor FINALLY said we were getting discharged it was like ‘can’t we just have gate leave?’! It’s so great having him here with us though, but at the same time, very scary!
We were given bags of medication & instructions & had to hire a pump to give him the nasal feeds overnight & it all seemed to happen so fast. But now he’s here & we’re so happy & we’ll make the most of it while he’s still well.
We have a clinic appointment on Thursday then he has to have a ‘boost’ of chemo (just an injection into his central line) on Friday then we’re thinking if he’s well enough we may take him back to his ‘real home’. We will most definitely get admitted to Canberra hospital whilst there due to fevers/ infections etc, but it would be so good to take him home.
We’re due back here on the 8th of November for some tests & his next round of chemo is scheduled for 10th November – all going well.
At this stage we are just planning to enjoy every single moment we have ‘out of hospital’ with our boy!!
Friday 27th October 2006 - We've had a great time out with Tyler. Although we were a bit apprehensive at first, we soon learned to just enjoy it. Wednesday afternoon we took him for a nice drive along Coogee Beach to Maroubra Beach. He really enjoyed just being out & about in the car.
Yesterday we had clinic with the doctor which went really well & he was very happy with how Tyler was (he was actually ‘running a muck' in the surgery but he was SO funny)! After that we visited one of my uncles & then had a very yummy dinner at Kerrie & Kevin’s. It was great to be out & about & for a moment life 'almost' felt normal!!
I've had the car packed for Canberra for a couple of days now but remained quite 'realistic' about it all & only packed stuff we planned to leave there. Of course the inevitable happened & at 1.30pm today (half an hour prior to his clinic appointment for the chemo boost) we were admitted back through emergency as Tyler spiked a temp of 38 deg. We are so disappointed but at the same time relieved that we were still in the area. I think it would have been worse to get all the way home, only to have to continue on to Canberra Hospital! At least everything is familiar here & being so close to RMH makes it a lot easier to cope with all the 'back & forth' from 'home' (being RMH) & hospital.
We are in a little bit of unfamiliar territory as we have been admitted to C3West which is actually an 'infectious' ward. It's quite a concern to us as Tyler's white cells are almost at their lowest - being 0.12. We have been assured though, that we are safe (as long as everyone washes their hands)!
Not much else to add. We are still remaining positive & this hospital visit may be as short as 48hrs - or it could be longer (here comes the - take it day by day phrase)! The most important thing is that Tyler is still happy (when he's not throwing a tantrum - which he did in emergency once he realised he wasn't allowed to leave), & overall he's not really sick (I know that's a strange thing for me to say) but he's not 'outwardly sick, if that makes sense! I'm tired so I'd better leave it at that!! He has proven how tough he is & this little hurdle is something that is unavoidable when his cells are down. We knew to expect it & he's coping really well. He is on antibiotics (again) which will should clear everything up quickly, keep the temps down & get us out of here ‘hopefully’ with an option to still go home for a few days. Time will tell.
Monday 30th October 2006 – YES, we’re still here!!! Tyler is doing pretty well, better than us I think because we were just SO close to getting home that now it feels like every hour that passes us by is just torture!
We got a little confident today as Tyler’s temps stayed under 38, however, earlier this evening they were starting to sneak up to 38.1. It’s a little bit funny because we’ve been taking his temp throughout the afternoon & when it got to 38 we were like “let’s just not tell them & it might go away!” In the end we knew it was to important to ‘let slip’!
As far as we know (although we’ve not seen any of our doctors over the weekend) is that if the temps don’t stay down they will most likely change the antibiotics which he will then need to be on for another 48 hrs to see if they work! That’s at least another 2 days delay!! We are assuming this.
I know at this point we should be focusing on what’s wrong with Tyler to cause his temp but apart from having very low blood counts (which is to be expected), he seems pretty well. He does appear to have mucositis which is like ulcers down his mouth, throat & in his tummy which is causing him a fair bit of discomfort & stopping him from eating & would be quite painful. It could also be causing the temps (I’ll confirm that when I see our doctor) & he’s also being more clingy than normal but I would say, overall, he’s handling everything really well.
He had to have a blood transfusion yesterday afternoon & some platelets last night & we did notice that he was a little more energetic today.
Hopefully we will see our doctor tomorrow & get some answers. I think we’re both just finding it all a bit much at the moment because we have seen him so sick where the thought of getting him home didn’t even enter our minds to seeing him now – quite well & we so desperately want to give him a few days at home. I think it will help our sanity also as we’re feeling so exhausted right now & we’re not even a third of the way through his treatment!!
At the end of the day, as frustrated as we get confined to the hospital & waiting for answers or things to be done etc, at least we know he’s safe there & he’s the most important thing!
Wednesday 1st November 2006 - We've had a really low day today. When I say we, I mean Terry & I, Tyler has been good. I had a really rough night last night in hospital & had very little to no sleep, Tyler was also very restless but his temperature had remained down. When I saw the doctors this morning I was positive that we were going to be discharged, Terry & I had been led to believe that if his temps stayed down there should be no reason why we wouldn't be discharged & we were so excited about the thought of finally taking him home today - well they found a reason & I can't believe that we (again) built ourselves up with so much hope, only to be knocked down again. I think I could have just cried all day if I got the opportunity to!
Tyler's blood counts are too low which means he is to stay in hospital for a few more days on antibiotics (they can't give us a timeframe) but it will be until his counts come up. If you look at that realistically (& in a normal frame of mind) you can understand & see that they have made the right decision for Tyler - it's much better to be precautious than take a risk on letting him out & him getting very sick. We are very grateful for that, but at the same time we are so disappointed.
Ash is coming up here hopefully on Friday as I feel that she really needs to see her brother & she needs to spend time with us. We also need to spend some time with her so I've arranged with the school for her to have next week off. I don't realise how much I'm missing her until I allow myself to really think about the whole situation we're in. That's something we try not to do too often otherwise we'll just get consumed with what a nightmare it all is instead of being able to just focus on seeing Tyler through it. What will most likely happen now is that he will get discharged on Friday, Ash will get here & we'll head back home!! That would be funny & if it does happen that way, hey, we'll take what we can get & at least we'll all be together!!
Last night Terry & I went to a dinner at RMH while Kevin stayed with Tyler (they wouldn't let him out). It was a really good night & we met Kyle (Idol) & Peter Morrissey (fashion designer) as it was the launch of McHappy Day & they are involved this year. Was great to be out together, but a shame not to have Tyler with us.
We were 'allowed' (after lot's of pleading & I think they could see how distressed we were today) to take Tyler out for a couple of hours tonight as there was another dinner on at RMH. He gave us a bit of a hard time, threw a tantrum as he occasionally does now & then ran around like crazy & had an absolute ball with some of the other kids! For a little boy who at the moment has next to nothing in the way of white cells & platelets etc, he certainly had some energy!! I think it helped us cope a bit better with everything especially seeing him running around having fun - as he should be!
Tomorrow is another day & we will get through. It will be easier than today because we are not expecting anything from it.
Friday 3rd November 2006 - WE'RE GOING HOME!!!!! Not much else to report other than that & we're all ready & packed to go. We are due back here for tests on Thursday now so will come up Wednesday afternoon.
YAY!!! Thanks for all the prayers & vibes to get us back for a few days, it worked!
Tuesday 7th November 2006 - YES, we got home!! Tyler has had the best time at home. It has been so good to see him running around outside & playing like a normal kid. To look at him (apart from no hair & a nasal gastric tube) you really wouldn't know how sick he is. He's been laughing, cheeky, playing hide & seek with his big sister & basically just been having a ball. He's even been eating really well which is great.
It was funny when we turned on to our road Friday afternoon & we heard this little voice from the back seat say 'nearly there'! That at least put an end to our concern that he may not remember much of his life before hospital! We have managed to catch up with lots of family & some friends & for a few days have sort of settled back into what used to be our wonderful life (although there was still the constant dark cloud still hanging overhead), it has still been extremely rejuvenating & has really given us a lot more strength to cope with Tyler's next round of treatment.
It's a shame that we have to head back to Sydney tomorrow afternoon but at least we will be another step closer to getting Tyler better. We are really hoping that he will handle this next round of chemo well but are a bit concerned as it is a different 'cocktail' of drugs. Thursday he needs to have an 'Echo' test (ultrasound of his heart) & a kidney function test due to the fact that this round of drugs can affect the heart, kidney function & his hearing & they need to make sure that they can compare 'before' & 'after'. It's pretty scary what these drugs can do but then the whole situation is scary. If all goes well & he's not too sick or kept in for temperatures straight away, we will plan to head straight back home in the hope of making it to the fundraiser on Fri 17th Oct. Would be great if we could both be there but will of course depend on Tyler's health.
I'd just like to say a quick thank you to a few wonderful people: Firstly, Myer at Belconnen for their generous gifts to Tyler & our family & their prize donation to the fundraiser raffle. Your kindness means so much to us & is truly appreciated. Also a huge thank you to all the other organisations that have made prize donations to the raffle (all listed in the Event Raffle Supporters page). Special thanks to Hayley Jensen, Annie & the Armadillos & Soundhouse for donating your time & talent for the event. Your support in this is wonderful. Lesley & Amanda have put a huge effort into making this night a huge success & I'm sure it will be. Thank you both so much for all the time & effort you have put into this & also for initiating this website.
Kerrie & Kevin, thank you for all that you have done & are doing for us. From the yummy packaged home cooked dinners (Kevin!) to starting up the Sydney official Neuroblastoma Research Fund & also the amount of time & effort you are putting into the Sydney fundraiser. It's such a great support having you in Sydney.
Mum & dad there is not enough I could say that could possibly express our gratitude to you. You have always been there for us & especially at a time when we needed you the most. Thank you for EVERYTHING : )
Elke & Brett, thank you so much for welcoming Ashleigh into your family & caring for her through what is probably the most difficult & important time of her life. You have no idea how much easier you have made the whole family separation thing for us. As hard as it is, it is such a comfort to know that she is well cared for. You are very special people.
We feel so lucky to have such wonderful support from our family & friends & from those of you who have never even met us. Your kindness & well wishes really lift our spirits & help keep us going when things get tough & things really can get tough at times.
Another thank you I'd like to make is to Jay. Jay is a wonderful, amazing, 11 year old boy who has been battling Neuroblastoma for pretty much most of his life. He has an amazing mum & together they are such an inspiration not only to those of us that are going through a very similar situation but to anyone who reads his website. Jay has won a very special award (he's not able to say what it is yet) but he will receive it in Sydney on the 22nd November & I'm sure we will all hear of it then & I'm sure it is something that he truly deserves for all the awareness he has brought to Neuroblastoma. Thank you Jay for being such a huge inspiration to us! Please visit Jay on his website www.jaysjourney.org & sign his guestbook as he loves to get messages from people.
All in all we have had a wonderful time at home with Tyler & Ash. Fingers crossed that Tyler will get through next week without any complications & we'll have him back here running around before we know it!
Friday 10th November 2006 - Tyler has been GREAT. Although we were dreading coming back to Sydney he has adjusted to it all really well. He was not bothered at all about being back in hospital. The doctor seems very happy with his progress & is planning to do tests prior to round 4 to ensure that he is responding to the chemo. He is expecting that he is as are we & we won't allow ourselves
